Stability of leisure participation from school-age to adolescence in individuals with cerebral palsy

Abstract

With increasing age, youth with disabilities are at risk for decreased participation in leisure activities, a key component for physical and mental health. This prospective study describes changes in leisure participation and leisure preferences from school-age to adolescence in children with cerebral palsy (CP). Participants were recruited at school-age (6-12 years) for a study on participation and reassessed for a second study on adolescents (12-19 years) if >12 years. Thirty-eight children (24 males) with CP who could actively participate in the completion of the Children's Assessment of Participation and Enjoyment (CAPE) and the Preferences for Activities of Children (PAC) comprised the sample. Average time between assessments was 5.0 ± 1.3 years. Most children were ambulatory (32/38 Gross Motor Function Classification System I-II). In addition to the CAPE and PAC, children were evaluated using the Gross Motor Function Measure-66 and parents completed a socio-demographic questionnaire. Paired t-tests revealed a significant decline in leisure participation diversity and intensity (CAPE) for recreation (p<.0001), skill-based (p<.0001) and self-improvement (p<.05) activities, whereas social participation remained stable (p>.05). Diversity of active-physical activities increased modestly (p=.06) although intensity of participation in this activity domain decreased (p=.003). There was also a decline in enjoyment of leisure activities. Preferences for these leisure activities remained unchanged between school-age and adolescence, except for recreational activities. Gender, maternal education, family income and gross motor ability were not related to differences in CAPE/PAC scores with increasing age. Findings suggest that over time, children with CP's participation in leisure activities diminishes, which is of concern to their functioning and well-being. Parents may be more involved in early childhood in facilitating participation whereas in adolescence, youth may be faced with more environmental barriers and a greater awareness of challenges to participation. Adolescents demonstrated a persisting desire to do these activities, challenging rehabilitation specialists to prioritize strategies to promote greater participation as children transition to adolescence.

Keywords: Cerebral palsy; Leisure; Longitudinal; Participation; Stability.